About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Wednesday, May 20, 2009

Hi again my Peeps! How is everyone? Good, I hope! Well, first I want to add a couple more photos from my birthday @ Celia's! The one photo is Mark having poured us all some Asti Spumante for a toast! Then of course he baked me my favorite Italian Cream Cake from scratch! It is sooo awesome! Mark says it would have looked better, but he made it and frosted it while it was still warm, because we were heading out to the island to The Fossums house! This was the first time he used (at my request) some of the "tools" from his cake decorating class and put a swirly trim on top and bottom. Unfortunately, the top swirly rim ended up @ the bottom I think because it didn't help that on the way, the cake kinda slid a bit to the side of the cake holder! Who cares what it looks like, it was delish!

Ok - back to business! Let's see .... I woke up @ 2:30 a.m Monday morning, sat up and felt my neck. I knew something was going on, so I turned the bedside lamp on and woke Mark up. I asked him if I was bleeding or it was just sweat. Nope, it was bleeding alright! Got some blood on the top sheet too - went to the bathroom and took the dressing off, but it had already stopped. Mark had put some surgicel on the area that he felt would be giving us problems and that was what kept that bleed from being worse!

So, both of us were falling asleep @ work Monday, what w/being up late w/the bleed! The next morning, Tuesday - I was getting tired of looking @ my puffy eye! Yeah, it started getting puffy on Saturday and kept getting worse! There went my fun in wearing mascara! So I had Mark take a photo and I sent it to both of Dr. Yakes P.A.'s (Rhonda is still there) and to the patient coordinator, Sadie, as well! Got a call from Eric and he asked me about it and how I was doing! Told him about the two recent bleeds and he asked if my eye was still puffy. Told him that photo had been taken a few hours earlier! See glamour shot! So, he agreed to send me a round of Prednisone (steroids) to bring the swelling down! Life with an avm - I woke up @ 4:30 because Hanz was in bed w/us and I thought he had to go to the bathroom. Well, I ended up just staying up and deciding to blog! When I talked to Eric, he sounded sleepy. I asked if it was because of the new baby and he said yes. Eric and his wife just welcomed a baby girl, Lindsey. I think Eric said 7 lbs. 12 oz.! Ok - gotta get a few minutes sleep before the alarm rings! Just had to show y'all my puffy eye!

Thanks again for being my buds and keeping me in your prayers! Have a great day!

Sunday, May 17, 2009

Hey Friends, Family and/or Prayer Warriors!

As always I want to say how much it means to me to have so many of your prayers! I am very blessed and that is what helps get me through my work days, my procedures, the bleeds - everything I endure! There is always that darned pain! Hmmm... I guess I should start w/the latest news and go backwards? I'll probably jump around and confuse everyone!

At the end of my work day Friday I was soooo happy! I just could not believe another week had gone by and I've got TWO DAYS to spend with Hanz and Mark! (Like Mark says, notice the pecking order)! My baby Hanz is so adorable and unbelievably cute! Such a winning personality! I was showing one of my friends @ the main office Hanz' photo and she could not believe when I told her that he drags that duck that mom gave him for Easter everywhere! Hanz grabs the duck, looks @ me and then starts running around the house with it, so I'll chase him! Most times, he's too quick, so he'll wait for me to almost catch up to him, before he starts running off again! I can only go "round the dining room, through one bedroom and the hall" about 5 times before I just poop out! I tell Hanz, "Mommie is too old for that"!

Oh! Back to my stuff! Well, we were up late Friday night, so I was waking up about 8:30 am on Saturday. Soon as my eyes opened up, my first thought was, that I would go get Hanz and bring him back to bed! My neck felt wet, so when my hand touched that area, I could pretty much tell I would be seeing blood. Yup! So as usual, I go, "Mark, I'm bleeding"! As usual, he goes, "You are kidding"! So we start the drill! I was dripping blood on the way to the bathroom, and I got my dressing off my face and I could see where it was bleeding from. Mark had just pointed out that area the night before when we was changing my dressing - saying that the very same area looked like it would be giving me trouble! Actually, soon as I removed the dressing and put some pressure on the area, it stopped bleeding very soon! Mark cleaned the area and redressed it and we just went about our business! I ran a couple of errands, then came home to spend more time w/my two favorite people! Later that night, I grabbed Hanz and he and I headed off for bed! Mark, I knew would be falling asleep on the couch, which he did. About 1am I heard or felt something, so I turned the bedside lamp on. I saw Hanz was up and looking @ something on the bed. Hanz had thrown up, poor baby! I looked @ it and apparently he had eated some gold threading from one of the cushions near where I had my Build a Bears, Saba and Rulon! Hanz is always wanting to get to Saba, and I'm sure that tassle w/gold threading caught his eye! Hanz is like having a toddler around 24/7! We have to watch him and everything he puts in his mouth! Course we had to change the sheets, but he ended up sleeping w/us that night all the way through for the first time!

Anyway, it's late and I'm gonna wrap this up soon! Here is a photo of the dinner my sister made for us on my birthday, May 1st! She made arroz con pollo (chicken w/rice) and mom made tortillas!

My next trip to Denver will be June 10, 11 and 12th! I need to be doing some exercises to make sure my mouth can open wider or the anesthesiologist is threatening me w/a trach! Yikes! As always, thank you all so much for all your love, support and prayers! Could not do this without you!

Don't forget! If you get a chance, check out my buddy Shalon's blog and website! She always has great stuff on there and she's adorable! You can get to her sites from mine!

Love to all!

Cyndi

Oh! I almost forgot to tell you about something that happened the other day @ work! I had gotten a call from a lady that had been there before w/a defendant. She is his caregiver and being in the medical field, she was interested in learning more about my avm. Her name is Julie Ann - and she came into the office again and surprised me w/a nice gift! She gave me a wooden box that opened up, and inside were a couple of things! One was a silver compact/pillbox and on the cover of that it says, "Being normal is over-rated"! There are also little slips of paper in that box, that Julie Ann says when I meet an obstacle in dealing w/my avm, I should write that on one of the papers and pray about it. She herself put some wooden letters on the cover of that wooden box that say, FAITH BOX and it also has a red heart on the front of that wooden box! Julie says she was so impressed with my great outlook on everything in dealing w/my avm, and she was moved by my blog and all I had written! Wasn't that sweet of her to come by and tell me all this! She is really nice and wants to help me in any way she can! I tell her that is one of the reasons I have this blog - to help people know what someone w/an avm goes through on a daily basis! So that more people can understand what having an avm is all about!

Sunday, May 3, 2009

Hello to everyone following us on this avm journey! I have so much to write, so grab a snack and get comfortable! Before we even left on our trip, I had an arterial bleed here @ home @ about 3:00 a.m. Tuesday morning! I had been reading off and on, felt something wet on my neck, and by now you even know the drill! "Mark! Get up! I'm bleeding"! It was going so fast, I barely had time to make it to the bathroom and the blood was wanting to come out the top of the dressing up to my eye! I peeled off the Tegaderm and sure enough - out shoots the blood! Once we can determine where it's bleeding, we just wet a paper towel and put pressure on the area until it stops! Then Mark redresses it and we try and go back to sleep! So, as always, we were needing sleep before one of our trips!

To boot, @ the last minute, we had to change the place that would be taking care of our baby Hanz! We didn't know that my sister Celia would be able to take care of him, then @ the last minute, her mother-in-law had gotten to feeling worse in the hospital, and she knew they would have to be taking off to get back to Houston! So we called Marks brother Jim and his wife Shelley, to please take our Hanz in while we were gone! So, instead of spending the evening packing, we headed out to Rockport to leave Hanz w/Uncle Jim and Aunt Shelley! They really did us a huge favor and took such great care of Hanz - they have 4 dogs of their own! Hanz loves running out on their property, as they live in the country! I only sobbed a little when we were dropping Hanz off - not as bad as I did last time we left him behind!

We didn't get off to the best start either. We didn't pack until the morning of our trip! Rushed to get to the airport and if we heard correctly - the pilots had a late night flight or something, so instead of our flight leaving @ 6:00 a.m., it didn't take off until 6:40 a.m. because they arrived late! So you know what that meant, right? Yup - didn't make our connecting flight - but we were moved to the next flight out.

Luckily, my appt. w/Dr. Reed isn't until 4pm, so we have plenty of time! Actually, Dr. Reeds office called on my cell and asked whether it was possible for me to come in early - @ 2:30 p.m. No problem! Dr. Reed has a new office location in a great part of town that has lots of restaurants and a big mall I like! So we had lunch @ Mimi's Cafe and then took a quick look around the Park Meadows Mall! That is the mall Celia and I had gone to on one trip and we enjoyed going to Borders bookstore! So Mark and I walked in there and I asked the clerk if there was anything "Twilightish" available. She took me to where they had a display set up of different things from the Twilight movie, plus she recommended another book that everyone's talking about called MARKED! Couldn't decide, so I walked out w/out anything. Saw Dr. Reed - got to meet one of his P.A.'s that my bud Shalon calls her twin, because they share the same birthday! Don't ask me what his name was, I just called him Shalons twin! Unfortunately, Dr. Reed is concerned that the avm might grow toward the middle part of my ear, and if that happens, that may require an ear surgeon to replace some of the bones in the inner ear! YIKES! Let's hope that will NOT be the case!

We finally headed to the hotel to check in - I had lots of salad left, so that was going to be my dinner. Mark had brought back some bread and stuff and he wasn't all that hungry, so we were in for the night!

Next morning, we were expected @ Swedish by 7 a.m. to pre-register! So, here is a photo of me w/Melody! She is one of the two receptionist we see every time we go to Swedish! Very nice - she has pets, so we always talk about our furry kids!

Head over to get started w/the IV's and stuff - and of course the first nurse doesn't get it in right away! I told her she was fired (kidding of course), but she got another nurse to give it a go and she got it! Soon after, as usual, it's time to go to the bathroom. On the way back, we saw a basket of magazines on the nurses station counter and were looking through them, when Dr.Yakes came up behind us and put his arm around us! I barely had time to ask him about my ear and didn't get a clear enough answer, but I will get it and share that with you!

I was surprised to see Rick Smith, my favorite post op nurse too! I was under the impression he wasn't going to be working that day! That was a nice surprise!

Back to the hospital bed, where I got comfortable and dozed off, so Mark had to wake me up to talk to the anesthesiologist! We know when they show up, that pretty soon it's showtime! I answered one question and fell right back to sleep! Mark told me to sit up so I could stay awake! A few minutes later, transport comes to get me to take me to the surgical room! Here is a photo of James (transport) and Lori (nurse?) right before I get the happy juice!

Next thing I know, I'm waking up in recovery and all I remember is seeing Rick come by to check on me! I was so sleepy, that I didn't have time to worry too much about pain or getting ice chips! Next thing I knew, my room was ready! I asked where Mark was and was told he was back @ the hotel! He says the nurse said she would call him before they moved me to a room and they never did! Meanwhile, he has my purse and everything I need to get a hold of him - so one of the nurses was nice enough to put in her long distance code so I could call Mark on his cell! We never know how long I'll be, so Mark gets time to either go back to the hotel to nap, or check things out! In the parking lot of the Park Meadows Mall is a traveling Titanic Museum that Mark took a tour of! I was really happy to find I had a private room - brand new! It was large and had a nice shower, so after I was able to get up (had to be in bed a few hours due to angiogram - groin stick) It was so great taking a shower to get all the blood out of my hair! Before all that happened though, Dr. Yakes P.A. Eric showed up to see how I was doing! He asked for Mark, but Mark hadn't made it to my room yet. Eric asked if Rhonda had a chance to talk to me and I said no. He just goes, "oh". I looked @ him and said, "Is she leaving"? Eric admitted that yes, Rhonda would be leaving Swedish @ the end of the month! I had a feeling I knew what part of the reason was, but we won't mention the office politics here. Unfortunately for Eric - he'll have his hands full for a while! He has to be part of the interviewing process, plus by the time the new P.A. is trained, then it takes another while before all the paperwork for the P.A. is processed - so Eric will be on his own for a good while! Poor guy is already stressing because he and his wife are about to have a baby any day now! They already have a 3 year old, plus Eric has a 10 year old stepson!

Mark finally came in, loaded w/all the things I need to have to stay overnight! He changed out my dressing, plus I could see that I was getting some drips from the excess alcohol coming out! If I don't keep dabbing it, it will eventually burn my skin! We thought about this before, but finally did it this time - we weren't sure how much it would help to tape a piece of gauze where it was dripping. We were just afraid the fluid would collect there and then burn a "hole" anyway. No, it actually worked really well! Thanks Mark! He is such a great nurse! He was explaining to the evening nurse Judy about changing the dressing! So, after my shower and dressing change, it was time for dinner! Mark brought in pizza from Ricos across the street from the hospital! One of the techs came by to take my vitals and she says, "you smell good"! I had just gotten out of the shower, but I asked her, ... "so what are you saying? That I stunk earlier"!? She just had to laugh and say no, that's not what she meant!We settled in to watch Survivor, and soon after that, I crashed out! See photo!

Oh! Here is a photo Mark took as he was out and about in Denver! Weird signs, huh?

Back to hospital business ... we hear that the real Saba is having a baby any day! She is one of the techs that is from Eastern Ethiopia that I named by Build a Bear after! The nurses were telling us how they keep checking the computer to see if Saba has checked in yet to have the baby! Plus, I got a visit from Brett - another favorite nurse! She recently took an Alaskan Cruise where she got married and she is now pregnant! We caught up with her, and then Rosie from Puerto Rico stopped by! She used to work in housekeeping, then studied to be a tech, and is back in school studying to be a nurse! She asked whether I had seen Joanna from Portugal and I said no. So Rosie said that Rhonda Sharp (the one who is jumping ship @ the end of the month!) had told her Joanna looked so great! All of Joanna's procedures are done - she had the debulking done w/Dr. Yakes and that made a big difference! Also, somewhere along the line, one doctor had accidentally damaged a nerve near one of Joanna's eyes, so her face drooped in that area. Fixed! Looks like new! From what we hear, she'll have the rest of her reconstructive surgery in Portugal! Isn't that awesome news? Can't wait until that is ME someday!!!

So, soon after I crashed, Mark went back to the hotel to get some rest! I had already been falling asleep while he was changing my dressing! Course I woke up a couple of times during the night. Eric had mentioned that he would swing by my room about 7:30 a.m. to sign my discharge papers and give me any prescriptions I needed! STEROIDS! See photo. He also mentioned that Anesthesia wasn't too happy that I can't open my mouth up very wide. With the damage that has been done to my inner ear and tissue and stuff, it is hard for me to open my mouth up more than an inch. It takes me a while to eat and it's difficult @ times to not get food all over myself! Eric said there is something that a dentist needs to prescribe (let's see, do I know anyone?) something called Therabite and this should help me exercise my mouth to open it further. My ENT here, Dr. Zane had already told me I should be doing some form of exercises to get this in better shape. Eric said if anesthesia isn't happy w/my progress, they'll have to do a trach and we don't want to complicate things if we don't have to! UGH!!

Here I am with Leah, one of my RN's that took care of me! She was super nice and we enjoyed talking to her! Don't remember whether it was her or Judy that told us one of Dr. Yakes patients came for 94 procedures! It is a 23 year old man that had an avm on his shoulder and upper arm and it was huge! All gone! Wow!!!

Mark walks in to my room the morning of my birthday with my favorite White Chocolate Mocha from Starbucks and the Twilight umbrella I had been eyeing @ Borders! Neat! That was a cool surprise! Soon as we got discharged, we headed out to Park Meadows Mall! Mark had also given me a Borders gift card and we wanted to look around! It just happened to be drizzling, so I got to try out my new umbrella! I had Saba w/me!

So we walked around the mall and saw a Pet store - I hadn't seen a pet store in a mall in forever! Guess what we found? Some Brussels Griffon puppies! Isn't that something? Brussels are pretty rare around here! People comment on that each time we take Hanz to Petsmart! These puppies were like 8-10 weeks old! We asked if we could hold them - it was a brother and sister and we got the little girl to hold! Do you know how much they want for these puppies? $750! Yowza! We got Hanz @ the bargain basement price of $20 and he's a heck of a lot cuter too!

Dropped off my prescription to be filled, then headed to Whole Foods to find some lunch! Took it back to the hotel, ate and repacked and checked out! Drove to return the car rental and took the shuttle to the airport! We had a really good trip! Dr. Yakes used 18 cc's of achohol and I feel pretty good! It's the steroids! I'll be going to work tomorrow for sure!

Before we forget! Got in about 10pm on Friday, my birthday, stayed up late, but got up early to have breakfast w/Jim, Shelley, Linda, her husband Buddy and her brother John that was visiting from out of state! After breakfast, we picked up our baby Hanz! He had been having such a great time, but we really missed him and were sooo happy to finally take him home! Poor Hanz, got home, rested a bit, got bathed and we headed out to the Island to party! To be continued on next blog entry!